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This is not the news I wanted to deliver.....

momofive
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I am going to make this short as I'm numb, exhausted and sad for my children.

Straight to the point: Mark's urine at the hospital in pre-op was the color of Red Wine to start off and turns out has been that way for a couple of days. I was in a state of shock.

Surgery took 9 1/2 hours. Here is what I heard because honestly I was shocked and couldn't even think of too much to ask. The cancer has gone completely through the wall of the bladder and urine and blood were leaking into the abdomen (not a kidney infection or UTI...leaking), there were about a dozen cancer spots on his bowels, throughout lymph nodes and the doctor said something about the liver as well, but I was lost at that point.

The doctor profusely apologized to me and says they've scheduled the oncology team to come in and see him likely in a couple of days once he's more coherent. He said he wants to do aggressive chemo and give him hope.

My heart is aching for my children and I have to pull it together by morning first for my kids and then so that I can be Mark's advocate and pay attn to what the doctor says is going on. HOW do I explain this to a 5 year old when I don't understand it myself.

My first plan of action besides seeing Mark in the morning is to seek out the social worker through the hospital to give me guidance in dealing w/ this with my children.

With Much Sorrow,
Kelley

Explore topics in this discussion:

Cancer Surgery Pain Small cell bladder cancer Bladder cancer

48 replies

Tagmike

Kelley, My heart goes out to your and your family, This is such shocking news, we were so hopeful for Mark, you and the children. All I can offer at this point is my prayers.

lsh

Kelley,

So sorry to hear your news. We will all be praying for your family. However,don't give up hope yet. I went to a seminar on clinical trials for bladder cancer at MDAnderson about two weeks ago. I sat next to a research nurse who was telling me about a patient she had seen that morning who has an apparent remission but will stay on the trial drugs for a full year(he is only 7 months into the trial so far). I would at this point though seek professional help as to how to handle the situation with the children.

Lynda

Annasvenska

Dear dear Kelley

I am so sorry and I understand how difficult this must be for you.

You, Mark and your children are in my prayers.

Don't be afraid of asking your friends and family for help. Most people feels honored when they can do something for a fellow friend.

You are not alone.

Anna

georgiaE

Hi Kelley,

I am so very sorry for your news. It too was a shock that my husband Ed had bladder cancer also and we have been married for 40 years. I can't imagine being without him. After his rc June 18,09, we were told that a cancer cell had been dropped next to his bowels from the previous surgery at Sloan Kettering the summer before. Ed gets his first cat scan in 2 weeks to check for more drops. My husband also had chemo. It is hard on the patient , as well as the family, but I have heard so many wonderful stories of long time remissions that stopped the cancer in it's tracks, made it disappear, etc. In chemo we met a couple who the husband was suppose to have died 3 years before and was still here. Miracles do happen! You just have to believe and be there for your husband. He is lucky to have you . He has a lot to live for!

Our prayers and thoughts are with you and your husband,

Candon

Marilyn-Lou

Kelley, My prayers will be with your husband, your children, and you. My husband was diagnosed with small cell bladder cancer five years ago. Small cell is a very rare and aggressive cancer with a poor prognosis. He went thru surgery, aggressive chemo, and radiation. It's now five years later and we thank God everyday that he is doing well. I know how stressed I was . . . I had a great job and took early retirement because I thought I would lose him. But I still have him and am enjoying retirement. You have your children and they will be of comfort to you as you all struggle through this. Many prayers will be sent your way.

PattyL

I am so so sorry..... you and your family will be in my prayers.

I work with kids and there are 140 in my afterschool program. They brought in an oncology social worker to tell them why "Miss Patty" had been missing for so long. She was absolutely wonderful in putting it in termonology that was appropriate for each of the different age groups and answering their questions.... I totally recommend you get her help.... it will be extremely difficult for you to do alone. Kids are stronger, smarter, and more resilient than we usually think..... Hold them close during this.

Take a deep breathe and find any hope you can to hold tight to.... because you have to have hope to get through.

Patty

LadyJane123

Dear Kelley
I am so sorry to read your news. I will keep you and your family in my prayers. Please come here and lean on us. We are here for you.
((((((((((Kelley and family))))))))))))

silgal

Kelley, So sorry to hear this news. As others have said, don't give up hope... you are not alone. You are in my thoughts and prayers.
michelle

YvonneM

Kelley,
I am so sorry for your terrible news. Your game plan seems to be right on point. I will pray for you and your family. I wish there was more I could do. I hate BC.
Yvonne

Bob_M

Kelley,
I pray the doctors can not only give you hope, but actually treat this cancer. We're here for you...

Bob

MMB

Hi Kelley,

You are definitly not alone on this site. First handed I believe what has gotton me through a very difficult year dealing with your type of situation is to take one day at a time and surround yourself with positive people and friends. When the doctor speaks with you have a pad and pen ready, if you can't think to write down what he or she is saying hand them the pad and pen and ask them to please write it down.(I did) Try to focus on the day at hand and don't look too far down the road, you will waste energy doing that. You have too much to digest right now, give your energy to your husband and try and take care of yourself, eat even if it just something that slides down like soup you need to stay healthy. You will find each day will be a new challange with good days and bad days but you cannot, cannot give up hope, do not waste your energy on what is down the road but run with the good days. Wait to speak with the oncologist before you let your mind think the worst and consume you.
As far as 5 year olds go, try not to focus on that right now, (I am first handed dealing with that at this moment, triplets) and they are just 5 year olds, they are playing having play dates, getting excited about school, yes we are watching them closely but they are resiliant and you need to be there for your husband right now.
This site is here for you. prayers coming your way for strength and hope.
Mariann

spartyman71

Oh Kelly, I wish I was there to just hold you and Mark. I am simply devastated for you. I will pray for you and pray for and pray for you. I just am speechless and am hoping for you that peace and love will be with you.

Tom and Sherry in Michigan

marthageorge

Kelly,
I will keep you and your family in my prayers every night.
I live in Michigan, is there anything I can do for you?
Sandy

Tawny

Kelly, I was in the same place you are back in April. My husband is 59, and had no symptoms until one day right before I was leaving for wok he experienced severe abdominal pain. That night was the longest night in the hospital I experienced. Married for 39 years, 2 adult children, 3 grandchildren, one on the way, and looking to retirement and travels finally together. It was months before we could talk about it without crying. But we made a pact, if one of us crumples, the other one would help console and we would go forward. Surgery was not an option, too far advanced. But we just finished 3rd round chemo, awaiting results of repeat scans, and then more chemo. Maybe surgery then. DON'T GIVE UP! It's tough, but the people here on BCAN are tremendously helpful, knowledgeable, and we are all in this together. Powerful prayers in mumbers are effective.
Tawny

balihigh

I know how heartbreaking this news is to you and your family. As others have said, there are many who have survived this news. Miracles do happen and with the work that is being done around the country, there is hope. Don't give that up.

We are all here to help you in any way we can. Add me to the list that is sending many prayers your way.
Hugs,
Nancy

phallon

I was so sorry to have to read what you had to write. My prayers go out to you & your family. Like MMB said try & take care of yourself, because you will need all your strenght for your family. All of us on BCAN will try to help in anyway to make this road a little easier for you.

Phallon

Kyle-MO

Kelly, I will have you and Mark, and all of your family in my prayers. We will all be here for support.
Take care,
Kyle

Karego

Kelly, Our shock is up there with you just now too. We were so hopeful for you both. But, as you learn what to do/how to proceed, we will be here. One day at a time is all we can manage when confronted with this type of news. Your medical team will be arranging the best treatment and options they can. For now, rely on your family, friends, and us to support you however we can.
Karego

Moonerj

Hi Kelly
New treatments and new clinical trials are occurring every day. What is being done today was unheard of 10 years ago. Do not give up hope.
Your family will be in my prayers.
Jack

Memi

My thoughts and prayers are with you and yours.

Memi

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Related links from BCAN

Researchers are looking for bladder cancer survivors to complete a telephone survey. Click here for more information.

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Information for those newly diagnosed with bladder cancer from BCAN.

Bladder Cancer Basics for the Newly Diagnosed
Download or order a copy of BCAN's patient handbook "Bladder Cancer Basics for the Newly Diagnosed" free of charge.

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BCAN's November Patient Forum in San Francisco
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Saturday, November 7, 2009
9:30 am - 2:30 pm
The forum and lunch are free, but pre-registration is required at www.bcan.org or 888-901-BCAN

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